Thursday, 7 October 2010

Que Sura Sura

I am a strong believer in that everything happens for a reason, if the ups and downs I have endured over the past year are anything to go by. The bad things have often been followed by good and this is what gives me hope for the future. Yesterday I learned my fate (finally) with regards to my upcoming trip to Australia. It is not good news. It seems that there is nothing that can be done to change my treatment dates. I either accept to have the treatment at the time I should be on the other side of the world with my best friends or decline it against doctor’s wishes and fear a flare up when I am over there (where nothing can be done). The fact of the matter is, if I don’t show for my treatment they have every right to take it off me so I would be putting my future in jeopardy.
As devastating as it is, and believe me I have done more than a bit of sobbing into my pillow over the past few days, the only way forward is to try and accept that what will be will be. On the good advice of my friends and family, if I let this infuriating decision get me down it will affect my physical health. I have to have a good cry, and move on. I have to concentrate on other things to look forward to, beyond my treatment (even though Australia was pretty much the one thing I wanted most out of life this year). Unfortunately it is another knock back in the long list of knock backs that come with being an RA sufferer, but who knows if this was supposed to happen so I could go on to better health and have the trip of a lifetime next year instead? It’s a given I wont have the same experience as all of my friends wont be joining me but I can still do it, just not now.
Apologies for the rant but I wanted to comment on some other infuriating information I have discovered this week…
A conservative MP, Nadine Dorries, urged people on her blog to report those who are claiming benefits for disability and tweeting more than 50 times a day to the Department of Work and Pensions. It is of her opinion that if you can frequently tweet, and be in communication with people through Facebook, that there is nothing wrong with you and you should be at work. She specifically mentions one arthritis sufferer as a case study, the person in question has since defended herself (thank god).
Now, I do tweet, and yes, I stay in touch with friends through social networking sites such as Facebook, and indeed write the blog you are currently reading. Without the luxury of being able to communicate through these methods, I would fear for my mental health. No, I am currently not able to work, due to flare ups and various other medical problems, but it is my intention to do so when I am fit and well. Isolation is terrifying for many arthritis sufferers so I really don’t agree with Dorries’ misguided and, frankly, ignorant opinions. She should maybe spend some time with these people who are possibly bed or home bound. Sometimes their only option, which has been the case for me, is to converse with people over the internet and really… what is wrong with that? Don’t get me wrong, if you can work, you should be working but if you cant, is it of the opinion that all ‘disabled people’ should suffer in silence and not be able to communicate with others for fear of their benefits being stopped? Ludicrous. She needs to be made aware that disabilities come in all shapes and sizes and don’t necessarily mean that the sufferer is in a wheelchair or unable to use their hands to type on a phone or computer for a few minutes.

1 comment:

hi Kerrie - you were great on Midlands Today - and it led me to your site. My grandmother was an MS sufferer and it taught me that you should always focus on what you can do rather than what you cant.

The 'box tickers' that frontline the systems often have no way to deal with disabilities as they don't have the flexibility in order to deal with people situations - whether they are disabled or not. The sooner that we learn that we are all 'special' or 'different' in our individual ways the more we could do to make the systems fairer and better for everyone.

All About Me

At the age of 22 I was diagnosed with Rheumatoid Arthritis. I did not know much about the disease but it seemed my life would never be the same again. After months of despair, loosing a loved one and giving up my dream job I am finally coming to terms with my condition. I realised that I am not alone and with the help of incredibly supportive family and friends I can live a normal life and will not be beaten by this. I hope in reading my stories you too those who have been diagnosed will realise you are not alone and those who know someone will get an idea of how their friend/relative may be feeling and the challenges we face. Now 24, I am ready to share my story with you beautiful people (be ready for one hell of a rollercoaster ride!)